[eveParticipant]

Hi everybody

Saw consultant yesterday ,was as nice as he can be!!!

We have been waiting for results of full Skelton exRay plus MRI scann and blood s for Kappa light chain results.
The good news is no more lesions ,the kappa are showing an increase which is to be expected as its 10 percent in bone marrow.Slim has another BMB on the 7 May. We see consult on the 24 May.
Once again I approached the idea I of a PET scann,as it would show if it was in soft tissue,again I was told it will not tell you what if going on in bones. We know what is going on in bones.!!!!! But it fell on deaf ears.
They agree Slim is unusual case,so why can they not think out of the box,even if it is for our peace of mind,we are the ones left without information which they have had for awhile.!!!

Anyway I tried. Jean you will have to tell me how your. Consultant thought it was needed!!!!

6 weeks before results as consultant is on holiday,I asked if we were seen early would anyone make the decision to star treatment. If needed,that's when he decided

Eve

[jmsmythParticipant]

Eve

Glad to hear that Slim has no more lesions. You just seem to be banging your head against a brick wall. Can Ellen or Maggie give you any advice. Franks consultant said that the PET scan was needed to detect how active if at all the Myeloma is. There is no proteins in the blood and as they had been dropping for some months before treatment she suspected no secretory. But eve I asked for tests to be done to see if it was non secretory and we are still waiting. I ask virtually every time we see her and she talks but I do t get an answer

Eve I hope someone finally sees sense and Slim gets the PET scan even for peace of mind

Love Jean

[feaseyjaneParticipant]

Hi Eve

It does sound like Slim is having a rough ride of it all

Can you not be transferred to a different hospital
My you that's easier said then done

Wishing you both well

Jane xxxxxx

[eveParticipant]

Hi Jane

There is no point SE is all the same medical team,I know this team well after 2. 1/2. Years I might have my moments with the consultant,but most are the same,when they get that high up, I did think may be general treatment at another hospital might be quicker but I think overall the unit has improved I will let you know if I am wrong.
I suppose consultant. Is like any body having a bad day,but could not fault him this time.

Just had a look at what trials are available ,for most you have had to have Revidimide and Velcade,so no good for Slim,if and when he start meds will I think be Revidimide . If Kings run a trial our hospital work with them " .
As I said Slim looks great it will depend on his next BMB it,s just the waiting,I just wish it would show up as normal,would be easier to spot .Eve

[SueMParticipant]

Hi Eve

I had asct similar time to Slim I think (May 2012)
I changed consultant in Feb as my old was was saying come back in 3 months despite nasty inc bone pain,He had finally booked mri but……. new consultant spoke to radiologist and they decided i needed PET scan as i had had lesions in arms and femurs before and PET would show whats active.
My pp reappeared in J an at 4g/l 🙁 Had pet in feb showing very hot spot in rt femur 5,2cm and a few other unusuals by end of Feb PP up again and up to 23.6 early march and 30.3 end of march despite 4 shots of radio 🙁

Ive had the nasty lurgy and whether thats had affect on my platelets i was stunned to find they had suddenly dropped to 25 ! 2 weeks ago so its bmb tomorrow and start treatment Tues ,Rev and dex if platelets good enough,strangely hb,wbc are fine just saying as im shocked how fast things went wrong from untraceable pp in Dec

Good luck to you and Slim
thinking of you both

SueM

[HelenParticipant]

Dear Sue
That is just an awful short time for you, I can only sympathise and hope all goes well on this next lot of treatment. It's such a tough road. Keep us posted on how you are getting on with it. I've been on the Revlimid for18 months now and had annoying but low grade side effects only.
Love Helen

[eveParticipant]

Hi Sue and Helen

Thank you for information Sue,my daughter tells me the lesions on the shoulder blades will be very hard to define new lesions as it does not show up very well, he is having difficult taking clothiers off because of pain,the lesions on the skull are easier to spot,he has told us no more lesions on skull,this is when I approached the possibility of PET scan,In his words he said we should not think ever pain is connected. With Myelma,I pointed out the oxycodone he is on he should not have any pain!!!!
He repeated the same thing PET scan will not tell what is going on in bones.he mentioned frozen shoulder I told him he did not have one,even if I took Slim to are doctor who is good,she picked up the bloods were showing kidneys affected.we see her this week.
I was hoping as the BMB shows 10 percent,if treatment started early like Jo there would be less damage to kidneys and bones.

Some good news for you both have you seen the home page,it has been approved the use of Velcade to be used again!!!!!

[andygParticipant]

Hi Eve.
Slim does seem to be having a rollercoaster of a ride with his rotten mm. Hopefully he won't need to start treatment again soon. Though I can understand the thought – it's back let's get treatment started again straight away. The trouble is with limited drug options the longer you can put off treatment the longer those limited drugs have a chance to keep us in the game.
Says the man who rattled through nearly all the drug options in six months!
Keep battling away for Slim Eve, I know you will, and good luck with the next Bmb.

Every day is a gift

Andy xx

[SueMParticipant]

Dear Eve and Helen

Eve mine showed increased uptake in my shoulders and clavicle area ( i have rheumatoid there) and they could tell the difference on pet from the more than 5.6cm lesion in femur where i get pain and the mega uptake there so they are not being accurate… keep pushing i had to change consultant and so glad as ive crashed now soooo fast maybe ?? if they had listened last year i could have seen it coming who knows ? I was and am on 50 mcg patches and pre radio needed oromorph maybe 2times a day but i was ignored then in dec ,see u in 3 months not a month then this happens hmm

Dear Helen
I do not want to hog eves post 😀 but was so touched by your response,week on platelets dramatic drop on report went to 11 and hb from 14 to 9.9 in maybe 1 month ……..neut dropped never do that mone haha.. to 1.7 but back week after on right way at 2.2
bmb aspirate looked at no report yet but aspirate an incredib;e 90-955 [plasma cells so had platelets monday and platelet responce 67.000 (you can expext 50.000 if 1 unit taken and works) Back Fri for bloods prob need platelets again.Started on high dex as per cdt regime but bit lower dose as have had dex myeopathy in past im mega sensitive woman 🙂
Clinic next Tues if bmb showing benefit from dex via bloods the add Revlimid 🙂
msg so appreciated HELEN 🙂

love to all esp Eve and Helen and Eva
xxx
Sue

[eveParticipant]

Hi Sue

I will keep trying,I do understand that even with the knowledge a PET scan brings,it will not change the outcome in Slims case,what they fail to understand,we need that knowledge !! I say this because we are busy planning are future, we are retired and intend to make the best of what ever time while Slim is reasonable fit.
I think they forget we need peace of mind, the good and the bad,to adapt and come to terms with,after seeing the same consultant for over 2 years, I thought he understood us.

Sue dare I ask,you do not come up with these facts,unless there is some form of medical training !!;-) or is it because you have a consultant who involves you !! In your illness ( I am not a number ) springs to mind.
We all wish for hindsight ,I suppose it is part of this illness

I do have a plan ,Slim is in good spirit mentally ,which is a bonus,saw are own doctor,who has given us good advice on pain relief, this seems to be working,it becomes a problem when you cannot sleep,it causes fatigue and exra pain.
Anyway morning has arrived time to walk the dog. Love Eve

[SueMParticipant]

Hi Eve yes hindsights great but my brother said some years ago it comes later sadley so all you can do is what seems best at that time.

In hindsight for me i wish id been a bitt fitter post asct then i would have pushed harder about the nasty leg pain and pushed even more than i tried for a post sct bmb to see whole picture,slim has you to do his fighting 🙂 which must be hard on you.

Maybe if my leg had been looked at properly earlier it could have been radiated and treaded drug wise after if needed to keep me at bay,this is what my new consultant hoped would happen but my bloods were so good except pp in fbc and i was new patient he was like 5 months past my view 🙂

You can quote me to your drs as a real person who pet scan was needed to see what was happening in that bone and how i have fallen off cliff my gps words sooo fast

Yes i am a trained nurse retired with back injury was a ward sister but had the precurser mgus when daughter born nearly 12 years ago so had been watched 3 monthly always from then and when i saw changes i started learning a bit of myeloma but had building blocks from mgus.

I contact imf in america rarely o get facts im too tired to search,Judy and debbie are lovely and will always email a dr to check their opinion if needed so helped my relief knowing i could hope for + 50 platelets after infussion which i got 🙂 so that was lovely I always think 2 heads better than 1 then you confirm your view often.

Zopiclone 1-2 3/4 hour pre bed is a great sleeping tablet i have used when bone pain and night sweats so bad the body does so much healing in sleep also ask for his vit d lvl blood test many cancers are low one study showed ? 70% myelomics are and low d doesnt help pain i had stopped taking during my sct post time bit before lvls were very low.

in america patients often have bi yearly pet scans to se complete picture of activity ,push about the pain and u know bmb good at mo but you need to know cause of pain as good analgesia may mean myeloma lesions that could be helped and you both deserve quality of life 🙂

hope havent missed anything im dopey hyper dexed but pain sooo much better after 2 days dex 20,10mg (lower to prevent myeopathy)
Have you checked out the other haemos there by word of mouth or myeloma uk it may be ? you feel like me maybe a considered change is needed mine was finally going to mri but same hosp changed one spoke to radio and they said pet needed as had had radio etc on femurs so wouldnt get accurate picture

hugs and best wishes
Sue

[HelenParticipant]

Hi Sue
I've never had a PET or MRI scan only CT, so MRI next week will be a first for me with mm, though I had a brain one as a research volunteer a few years ago…. And yes my brain is there,! I find the Revlimid tiring and it has probably worsened the peripheral neuropathy I had before diagnosis but not impossibly. I find it upsets my gut too, but overall I don't really want to stop it as it might have slowed things down a lot… Who knows we can't go back and see what I'd have been like without it! I do hope the next few weeks sort your levels out and you have an uneventful transition to Revlimid

Hi Eve
I hope the analgesia is sorted soon, I got referred to the palliative team for advice on which painkillers to take next as the nonsteroidals have been banned for me now and the codeine has only a short effect.
Love Helen

[eveParticipant]

Hi Sue and Helen

Slim has been much better with sleeping since we saw are own doctor,and if Slim sleeps I sleep.

I spoke to her,she recommended paracetamol on top of Oxycodone ,which has helped,he is always reluctant to increase drugs,this is a man who never had a prescription until he was sixty and that was a drug being pushed through the surgery,s for people over 60 I do wonder about the super dooper surgery,s are they good for patient,or is money controlling them. Anyway our doctor has gone to an independent doctors surgery,another lady doctor who, know s about Myeloma.So that's all good!!!

I am amazed how different people are effected after SCT,as you know Helen,I watched you and Wendy,with cough,s and colds,Slim has had nothing like that,in fact I asked for BMB for peace of mind,as Slim although not ill,was very stiff,lots of general bone pain,plus little memory,you can put so much down to age,but I think a partner knows!!!
His consultant said you should not imagin every pain is to do with Myeloma!!!!
I read it as do not bother me again!!!!

I do think the whole set up for relapsed patients is wrong,you are left like a fish. Struggling out of water,when I think of the care when diagnosed,then SCT,it is lacking for relapsed patients,and you start a big learning curve..

Sue as an ex nurse,I think you are blaming yourself for not seeing it,I think I am right in saying Helen had issues also,but you can be to close,as a nurse,you do not want to look a fool, with me I do not care,I hope they proof me wrong, I know I come over as a person with attertude !!!,. I just want the best care I can for Slim,it is a sad thing to say,but instead of hindsight may be we should just listen ,to what we feel and act accordingly. Love Eve

[VickiParticipant]

Eve,

Translate attitude for leaving no stone unturned to make sure slim gets the right results. I don't care either…..bet the hospital staff think I am mrs 20(no 100) questions but that helps me to help Colin. Hope you and slim are getting some good nights sleep.

That helps so much, take care both 🙂

Vicki and Colin x

[HelenParticipant]

Hi Eve
Thanks, I hope Slim's more comfortable now. I'm not unhappy with my treatment or how I was diagnosed, I think it's all been done as and when needed. As the patient, sometimes you have to have time to let things settle, I've found when my husband starts to do the asking, why and what next it is very unsettling for me so now I go by myself. It's much less stressful for me.
You probably all think that's terrible but it's my choice.
Love Helen

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